Augie's Story

Augie (center) with 4W- and their new squishable pug

Each year before the Cupcake Challenge I go to Cynwyd Elementary School and visit with some of the 4th grade classes to talk about our daughter Cal in whose honor we hold the event. This tradition started when Cal’s brother PJ was in 5th grade and he and I went into his fourth grade teacher Mrs. Wells’ class. These visits are always a chance to share a little bit about Cal, to tell her peers what she is like, what she loves to do and what she doesn’t, what TV shows she likes and how she communicates with us even though she can’t talk or use her limbs. Every time I ask the pupils if they have any questions the arms shoot up in the air and I am always awe struck by the variety and depth of the inquiries. What does Cal like to do? How does she get around? How do you know when she is annoyed? Does she like cupcakes? Is it hard for you to talk about her? Above all what shines through is the deep empathy that these nine year olds have for a child who is so unlike them in many ways, but when they probe as they do, they see that though she is different, she is a lot like them. She laughs and cries, she smiles and frowns, and she has good days and bad days.

This year’s visits were even more spectacular than normal. I was allotted 25 minutes for each class I visited and ended up staying well past my time, such was the interest and the volume of questions. And what is even more touching is how these children interact with Cal when she arrives at the Challenge. They treat her like a celebrity. Some are reticent to get too close while others clamor for a photo with her or ask her questions, for which I do my best to translate her reaction into answers. These children are not afraid of Cal’s disease like many grown-ups are. They run to her and want to be in her orbit. They are remarkable and we would do well to learn from them such is their gift for empathy and love.

And then there is Augie. You see this story is about Augie, not Cal or me or the other kids. Augie is a fourth grader at Cynwyd, who listened to me telling his class about Cal. He asked some really smart questions and I could tell he was thinking about this whole state of affairs. Over the years I can read how the young kids react and I can almost predict who will run to see Cal when she is at the Challenge. Augie is one of those kids. The mystery of Cal is not so difficult for him. She is a kid like him, with needs and likes and dislikes. And what she stands for is pretty cool. Augie gets that the Cupcake Challenge is trying to help kids like Cal and their families live better lives and, in time, advance the cures that are there to help kids with leukodystrophy. So when Augie came to the Cupcake Challenge he knew more than most of his peers about what we were trying to do. Sure there were cupcakes and they taste great. But the bigger goal was to get to a day when kids like Cal are a thing of the past, when kids with this disease can walk and talk and eat cupcakes and play on the bounces.

So when Augie was on the field over by the bounces and he found a $100 bill he knew that there was only one thing he would do with it. Yes it would buy a lot of candy, or a pair of sneakers or a Playstation game. Those things are cool but that was not what this money could be best used for. Augie and his pals marched into the school, found their teacher Mrs. Wells and told her that they wanted to give the money to the Cupcake Challenge, “for the kids like Cal.” The Cupcake Challenge is a crazy day to organize and the emotions that we go through can be pretty wrenching. But I can honestly say when I saw the look in Augie’s face when he turned over the $100 I felt something that I had never felt before. Here was a kid who was giving probably the most money he ever had in his hand over to something that he had only just learned about. The faith he displayed and the courage to do the right thing when it would be so easy to pocket the money and say nothing about it should give us all hope that the generation of kids coming will be just fine. Augie knows that there are things bigger than him that are worthy of our time, our effort and our money. He knows that there are causes greater than our own self-interest. The word hero is perhaps over-used but never has it been more appropriate than in Augie’s case. Augie is a hero and we should all hope that we have in us part of what is in him. If we do then the world will be a better place for it.